BMJ b/s painting PWME as threatening psych patients

[In Vitro Infidelium]

I have seen his signature on it. I never said "he" threw him into the swimming pool, if you re-read what I said, you will see I did not say that. His influence was there all the way in Eans treatment though and I doubt very much that all of that would have happened to him if Wessely hadn't been "in the background". Ean was sent to see him and it was from there that he was sectioned. There is a video on youtube with Eans mother saying all of this and Ean is in the video as well, so it's not false information.

How information is presented affects whether it has the capacity to 'misinform'. How Ean Proctor and his family view Wessely is a matter for them - I'd hardly expect them to view Wessely with much kindness, but if we are concerned to provide accurate and relevant criticism then we have to be diligent in our presentation. Ean Proctor's circumstance was prescribed entirely by his residence in the Isle of Man, a self governing Crown Dependency which in the late 1980s was still so backward in its attitudes to human rights that it still included the birching of children as a criminal punishment and imprisonment for homosexuality. The health and social services systems of the Isle of Man which heaped abuse on Ean Procter were without exterior oversight and the abuse can be consider likely endemic with all 'non compliant' children experiencing comparable abuses of their human rights. As a doctor, Wessely's actions in relation to Ean Proctor, are open to damning criticism, but those criticisms are not related to the actual abuse visited upon Ean Proctor - the responsibility for that lays both with the health professionals and Social Workers who had a day to day duty of care for Ean Proctor, and with the politicians and administrators who oversaw the consistently barbaric treatment of children who were unfortunate enough to encounter the legal, care and health services of the Isle of Man of 25 years ago.

Wessely may defend his actions in relation to Ean Proctor in terms that he (Wessely) couldn't know what the circumstances of Ean Proctor's enforcd hospitalisation would involve - such a defence is mealy mouthed at best, no one in Britain in the 1970s and 1980s could have been unaware of either the general poverty of hospital care available for psychiatricly ill teenagers anywhere in the UK, of the inadequacy of health povision in the Isle of Man, and of the prevailing attitudes to children in the Isle of Man. Wessely seems to have been hell bent on 'proving a point' without any concern for what the reality would mean for Ean Proctor. Excusing Wessely from direct responsibility for Ean Proctor's abusive treatment, while at the same time acknowledging Wesseley's culpability in opening the door to that abusive treatment, may seem legalisitic but it is important to make that distinction if we are to understand how that particular circumstance evolved. Ultimately the Isle of Man authorities could have chosen to ignore Wessely and follow the advice of the neurologist, the fact that Wessley's advice was preferred is a reflection of the prevailing prejudices of those authorities, rather than of Wessley's culpability.

Whether a near quarter of century later, the circumstances of Ean Proctor's mistreatment has anything substantive to add to an effective critique of the psychologisation of M.E/CFS, is in my view, doubtful; certainly for an audience such as the BMJ, if doubt is to be raised over the validity of the Wessley approach, the debate needs to be presented in contemporary, not historical terms. My guess is that most medics of all disciplines would be likely to forgive Wessely any failings from his early career, on grounds of "there but for the grace of [insert supernatural entity of choice] go I". Tactically, the first thing we need to do is stop giving those we want to criticise, 'free' return shots in the form of crazed diatribes and personal threats which simply allow us to be 'bagged up' in the very categorisations we are trying to escape.

IVI

 

[floydguy]

How information is presented affects whether it has the capacity to 'misinform'. How Ean Proctor and his family view Wessely is a matter for them - I'd hardly expect them to view Wessely with much kindness, but if we are concerned to provide accurate and relevant criticism then we have to be diligent in our presentation. Ean Proctor's circumstance was prescribed entirely by his residence in the Isle of Man, a self governing Crown Dependency which in the late 1980s was still so backward in its attitudes to human rights that it still included the birching of children as a criminal punishment and imprisonment for homosexuality. The health and social services systems of the Isle of Man which heaped abuse on Ean Procter were without exterior oversight and the abuse can be consider likely endemic with all 'non compliant' children experiencing comparable abuses of their human rights. As a doctor, Wessely's actions in relation to Ean Proctor, are open to damning criticism, but those criticisms are not related to the actual abuse visited upon Ean Proctor - the responsibility for that lays both with the health professionals and Social Workers who had a day to day duty of care for Ean Proctor, and with the politicians and administrators who oversaw the consistently barbaric treatment of children who were unfortunate enough to encounter the legal, care and health services of the Isle of Man of 25 years ago.

Wessely may defend his actions in relation to Ean Proctor in terms that he (Wessely) couldn't know what the circumstances of Ean Proctor's enforcd hospitalisation would involve - such a defence is mealy mouthed at best, no one in Britain in the 1970s and 1980s could have been unaware of either the general poverty of hospital care available for psychiatricly ill teenagers anywhere in the UK, of the inadequacy of health povision in the Isle of Man, and of the prevailing attitudes to children in the Isle of Man. Wessely seems to have been hell bent on 'proving a point' without any concern for what the reality would mean for Ean Proctor. Excusing Wessely from direct responsibility for Ean Proctor's abusive treatment, while at the same time acknowledging Wesseley's culpability in opening the door to that abusive treatment, may seem legalisitic but it is important to make that distinction if we are to understand how that particular circumstance evolved. Ultimately the Isle of Man authorities could have chosen to ignore Wessely and follow the advice of the neurologist, the fact that Wessley's advice was preferred is a reflection of the prevailing prejudices of those authorities, rather than of Wessley's culpability.

Whether a near quarter of century later, the circumstances of Ean Proctor's mistreatment has anything substantive to add to an effective critique of the psychologisation of M.E/CFS, is in my view, doubtful; certainly for an audience such as the BMJ, if doubt is to be raised over the validity of the Wessley approach, the debate needs to be presented in contemporary, not historical terms. My guess is that most medics of all disciplines would be likely to forgive Wessely any failings from his early career, on grounds of "there but for the grace of [insert supernatural entity of choice] go I". Tactically, the first thing we need to do is stop giving those we want to criticise, 'free' return shots in the form of crazed diatribes and personal threats which simply allow us to be 'bagged up' in the very categorisations we are trying to escape.

IVI

There will always be cranks in any large group. If we truly didn't have any, then people like ERV would make them up. In fact, I wouldn't put it past her for fabricating half the crap she posts.

 

[Mark]

Tactically, the first thing we need to do is stop giving those we want to criticise, 'free' return shots in the form of crazed diatribes and personal threats which simply allow us to be 'bagged up' in the very categorisations we are trying to escape.

That diatribe is so completely unlike anything I've ever seen from the ME/CFS online community, that I think it's highly unlikely there is any genuine connection to the ME/CFS community there, let alone a real connection to the WPI. It's interesting that the respondents on ERV's blog accept the ridiculous idea that this rant really did come from the WPI so uncritically - so much for scepticism!

Even if it did come from an ME/CFS patient, there is absolutely nothing you or I or anybody else in the community can do to prevent these sort of outbursts. We can bemoan them, but it's a big old world and there are bound to be all sorts of people out there with all kinds of views and attitudes - teenage wind-up merchants included. So tactically, it does not make any sense at all to link here to such a post, thereby boost its rankings, and draw attention to it; nor does it do any good to bemoan that posts like this exist. The only line that makes sense to me is to emphasise that these posts are not typical or characteristic of the patient community, to cite the abundant evidence that the vast majority of supporters of the WPI and advocates for continued XMRV research are reasonable and intelligent people, and perhaps also to note that ERV is merely a potty-mouthed graduate student with a 'shock jock' style pseudosceptic blog, who made up her opinionated and offensive mind about XMRV before any research had even begun.

Tactically, we should not accept the premise in attack pieces like this, the one in the BMJ, and Horton's disgraceful interview about the opposition to the PACE trial. This is a persistent theme in the press strategy: to constantly draw attention to what even the BMJ describe as a very small minority of patients and to misrepresent the valid concerns of an entire community of millions of sick patients as if they were characterised by wild and unreasoned anger. Would that a similar amount of ink were spilt on considering the very real and substantial suffering and grievances of those millions of sick people!

The reality is that ME/CFS patients in general show extraordinary grace, patience, and restraint in the face of such extreme and persistent provocation. The real story is the twisted way in which we are so often misrepresented, and the questions to be asked are: who has such an interest in representing us like that, what do they hope to achieve by it, and why do they keep doing it?

 

[taniaaust1]

As for Professor Wessely, he gave up active research on CFS/ME 10
years ago.

ummm . I think the writer of that needs to be sent a list of all the studies his name has been on in the past 10 years. If he's not interested in studying ME/CFS still, how does his name keep ending up on studies. Its all bullshit.

Im shocked but at all not surprised that they are making themselves out to be the victims now.

That article could put some researchers off of researching ME.

 

[Dx Revision Watch]

[Content deleted by Suzy Chapman who has now left the forum.]

 

[Esther12]

As any fule kno, any fule can register an email address/domain in the mispelled name of another organization.

It would be funny if it was some elaborate joke... seems a bit unlikely though. To me, it sounded like a kid/teens writing. Who knows?

I was going to say: "I really don't think some random postings on a blog would make people think less of all CFS patients"... but it sounded less convincing once I'd written it out.

 

[Enid]

Tania - to take up your point on the Hawkes article putting some researchers off ME - it does seem like a deliberate at scaremongering - Dangers of research into CFS......threats from activists......Prof Wessely and all those who approach CFS/ME from a psychiatric perspective are targets of critics. Well of course maybe he missed his point. As an organic disease to imply DANGER in all areas of research is just thoroughly irresponsible.

 

[SilverbladeTE]

There were Weapons of Mass Destruction aimed at us from Iraq! yes indeed! for those on High said so! Anyone who thought otherwise was weak, a coward, letting a madman imperil us! These experts KNOW! They have white coats and letters after their name!
And some who tried to show what was really going on "died from bizarre gardening accidents"

Tonkin Gulf Incident (start of US-Vietnam War) oh and what REALLy happened there we learned decades later?
http://en.wikipedia.org/wiki/Gulf_of_Tonkin_incident

Nazi Germany using a "fall guy" (who got murdered) to claim a radio station in Germany had been attacked by Poles, as an excuse ot invade Poland.
http://en.wikipedia.org/wiki/Gleiwitz_incident

What am I on about?
FALSE FLAG OPERATIONS (and also just plain old manipulation, but a bit more smoothly done than Machiavelli ever imagined possible)
http://en.wikipedia.org/wiki/False_flag

And in larger scope, Public Relations, bullshit, drawing people's attention away from "the little man behind the curtain (Wizard of Oz), Psychological Warfare and the manipulation of the public
ya all should read up on the stuff both East and West got up to in the Cold War to brainwash their public into supporting their crazy crap, including making the public accept both sides waving 20,000+ thermonuclear city-busting weapons at each other, like drunken men waggling their pensis at each other while holding shotguns to each others' heads and wearing suicide bombs, seeing who'd blink first.
Who was involved in making the public swallow that act of species-ending insanity? Oh, psychiatrists....isn't that suprising?!
So, who's good at manipulating things in the media, eh?
Who seems ot get all the BBC coverage, eh?

very long, complex way of saying: as before, these ass clowns are annoyed their precious little kingdoms are threatened, the do not like anyone stepping into their bailiwicks. "Only THEY must control ME/CFS! it is for the children!!! and thus, anyone who is against them, is a monster!!"
And so, they have their PR drive/stunt, this is them fighting back.
All they are interested in is control, *NOT* the suffering of millions of people.

Ah, what a load of horseh*t these assclowns spread! And at least real manure is good for the roses!
*makes a very rude gesture in the air*

 

[WillowJ]

I know the Gibson report was deeply flawed, but what it did do, was say that Wessely et al. had potentially serious conflicts of interest (being also connected to long-term disability insurance industry, particularly UNUM provident), which ought to have a full investigation as soon as possible. This is independent verification of Prof. Hooper's assertion.

The report also repeated the 1996 Lancet editorial complaint that biomedical evidence was being ignored. If I remember correctly, the report expressed amazement that Lancet had changed its position since 1996, being that 1996 was the more sensible position.

The report did not consider the case closed that there was an ME/CFS which was clearly biomedical, but it called for equal funding for biomedical research, which would be at least progress towards the right direction.

 

[WillowJ]

In the 2001 Guardian article Ms Boseley quotes him as saying:

There are many who have found themselves vilified andhave joined the ranks of others who have been abused and intimidated for producing research unpopular to powerful special interests.

http://meagenda.wordpress.com/2008/04/22/professor-simon-wessely-retired-tired-or-hired/

That's actually true, but SW is on the side of the powerful special interests, not on the side of the abused and intimidated.

The ME/CFS "lobbies" are not powerful, and it's quite laughable to assert or imply that they are! Dr. Enlander had it right when he told Lewellyn King that the anti-CFS lobby is the lobby with power and voice!
(2nd segment here)

See also Ken Friedman's testimony about the abuse and intimidation biomedical researchers are affronted with--and this is top-down persecution; much more serious than the bottom-up intimidation Wessely claims

 

[markmc20001]

The reality is that ME/CFS patients in general show extraordinary grace, patience, and restraint in the face of such extreme and persistent provocation. The real story is the twisted way in which we are so often misrepresented, and the questions to be asked are: who has such an interest in representing us like that, what do they hope to achieve by it, and why do they keep doing it?

That's exactly right. Thanks for being a voice of reason.

 

[WillowJ]

I don't want to take this important topic too far "off topic", but I would like to highlight just a few of the reasons why the "Gibson Report" is problematic and why people need to reflect on whether this document can be considered suitable for recommending.


"2.4 ME in Teenagers and Children

"We included this section because it was previously thought that children could not have CFS/ME. The Group received numerous submissions from parents whose children had or were suspected to have CFS/ME. It has been thought that children could not suffer from CFS/ME but the Group accepts that CFS/ME is prevalent amongst teenagers and possibly in children. However it is very unlikely to occur in infants and young children and so should not be confused with Munchausen by proxy for example."

Note child ME specialist, Dr Nigel Speight, had presented in the Oral Evidence sessions specifically on ME in children and young children but nowhere in the Report is his name or his evidence acknowledged.

"3.3.4 Vaccination

"Vaccination is often blamed for unexplained outbreaks of illness and regularly appears in the media being accused of such. The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause."

This statement by the panel of parliamentarians was taken up with Dr Gibson by Dr Charles Shepherd at the 2007 public meeting to discuss the content of the Report and how it might be taken forward as a political tool. Note Dr Ian Gibson has been a vocal supporter of the cervical cancer vaccine for young girls.


"4.3 Cognitive Behavioural Therapy

"The most effective psychological therapy, which has been shown as such in controlled clinical trials, is Cognitive Behaviour Therapy (CBT). This treatment has shown to be effective in patients with many long term illnesses for example cancer. Prof Trudie Chalder presented to the group on this treatment. Prof Chandlers [sic] results were impressive. This treatment certainly has a role to play in treating CFS/ME. Although in other illnesses this treatment is provided as an adjunct to treatment for the organic disease, in CFS/ME this, and GET (see below), are the only available treatments which have been shown to be effective in several controlled trials. It is unfortunately the case that no other treatments have yet emerged, again emphasising the need for more research.

"CBT is most effective in those with less severe forms of CFS/ME and appears to be much less effective in those with severe disease. As mentioned earlier this has led to some patient groups, speaking for those with severe disease, to deny that those with the less severe CFS/ME symptoms are true CFS/ME sufferers. It is clear however that no matter how successful or unsuccessful CBT may be it is at best only a partial answer. Prof Chalder suggested that CBT has a biological effect on the body. The Group would like to see further research into what this effect is as it may open avenues of investigation into biomedical causes."


"4.2 Existing Treatments

"There are 3 psychosocial therapies commonly used to treat CFS/ME in the UK.

(Goes on to list Pacing as one of the "3 psychosocial therapies".)


From the section on the NHS clinics:

"The existing treatment centres would be ideal places to undertake or initiate largescale epidemiological research studies of the type the Group feel are vital in this field. Providing they were conducted according to an acceptable criteria."

From the section on Benefits:

"At present CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments."

Incorrect.

Dr Gibson was asked to correct this statement about DWP and higher level benefits in the Report. The Report had been emailed out to over 600 MPs, gov ministers and the then CMO before it had been reviewed by anyone beyond the "inquiry" panel.

The Report was never corrected. Dr Gibson argued the toss with Charles Shepherd over this DWP and benefits error but reluctantly agreed to change it. He didn't. Apart from fixing a few typos in the spelling of names (and there remain typos in names) no corrections were ever made to the content. This error over benefits was then reiterated by the media.


"4.7.2 Diet and Supplementary

"There is no scientific proof of benefit from the use of vitamin or other dietary supplements. However if any of these have been found symptomatically helpful by individual patients the effect should be welcomed but a search through the shelves of the health food shops should not be encouraged with any optimism..."


This Report is excruciatingly poorly written; it is riddled with errors, ambiguities, misconceptions and inconsistancies. It contains language and constructs that are damaging to its constituency; the panel members were out of their depth and strayed into areas they were not equipped to deal with. At one point, they are even prescriptive about pain relief.

The Report does not even contain the panel's Terms of Reference.

The scope and remit of the inquiry was set, on the hoof, by Gibson. He chose to settle for a low level inquiry; he selected the panel members. He put himself in as chair. He failed to consult over crucial issues. There was no funding for the project; there was no dedicated admin. There are no minutes for some of the Oral Hearings. It was a shambles from start to finish. The first two public Oral Hearings were held virtually in camera because the panel failed to advertise that the oral hearings were about to take place. Advocates had to plead with Gibson to agree to give time at the Oral Hearings to clinicians like Dr Nigel Speight, though Chalder, White and Cleare were invited to present.

Gibson had announced to the media in mid 2005 that he was calling for a "full", "high level" and public inquiry. What he delivered was an unofficial, personal project undertaken by a low level, ad hoc parliamentary group.

It needs to be understood that the report was not a "Parliamentary Report", nor a "Government Report", nor an "official report", nor a commissioned report and is has no status within either House.

Some were prepared to spin this report in the days following its e-publication by issuing "summaries" and reviews that cherry picked. But the full report needs close scrutiny, especially if people are considering recommending it to politicians, medical professionals or the media.

Ok. I only read the summary on the 25% ME group page, which did provide some helpful things. It looks like from what you're saying, there's more unhelpful stuff, than helpful stuff. Deeply disappointing.

When are we ever going to get an official fair inquiry on both sides of the Atlantic and Down Under?

 

[Dx Revision Watch]

[Content deleted by Suzy Chapman who has now left the forum.]

 

[Enid]

Very interesting Post 49 Willow - the Lancet changing positions after 1996. No doubt in Prof Hooper's/Margaret Williams records I did hear of some unpleasantness directed so the psyche lobby are very capable of vitriol themselves at what they perceive as any criticism. But "changing position" - why so - internal or external pressure, vested interest, clubbing etc. and was this the death knell of biomedical research outside psychiatry - the answer has to be yes I think.

 

[Dx Revision Watch]

[Content deleted by Suzy Chapman who has now left the forum.]

 

[charityfundraiser]

The ISP you use to surf the Web is completely different from registering domain names of Web sites.

For those who would rather not give additional hits to Miss Abby Smith's blog; she has posted the text of an email she says she received from someone apparently called "Ron".

The content's not pleasant.

She's run the (static) IP through WHOIS and posted an image file of the WHOIS return.

The IP she says has been registered in the name of the

"WITTEMORE PETERSON INSTITUTE" [sic]

location registered as "Nevada".

This has apparently been registered through SBC Internet Services.

As any fule kno, any fule can register an email address/domain in the misspelled name of another organization.


The misspelling of "Whittemore" has been pointed out to Miss Smith, but she'll no doubt insist that this email must have originated from the WPI, themselves, and so will her fans.

Sad, really. A scientist, too.

Note that the domain for the WPI is

http://www.wpinstitute.org/

Registrant Name:HARVEY WHITTEMORE
Registrant Organization:HARVEY WHITTEMORE

Name Server:NS27.WORLDNIC.COM
Name Server:NS28.WORLDNIC.COM

 

[SilverbladeTE]

As for why people with M.E. are spitting angry mad?
Hell I once was known for having the patience of a rock, but even I have limits and 16 years of sickenss with incompetant, bigotted bumpkin doctors threatening my life with their idoocy and screw ups is MORE than enough to make even me lose my cool

As old Will' Shakespeare wrote:

"If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge?".

In other words, if you treat innocent people so wickedly, and worse, in such a hypocritical fashion (which really gets up folks' noses), it's no bloody wonder if they hate yer damn guts.
And my idea of revenge is the "firing squad" of a thousand printers typing out the recindment of a great many medical licences, and full page public apologie sin national newspapers, and the sound of much MUCH crow being eaten...ah, that'd be music to my ears!

 

[justinreilly]

On a slightly unrelated matter, in a 'summary' about CFS on their website, the BMJ say something which could have very dangerous consequences for patients. It's a highly irresponsible assertion, and I'd like to know what evidence they base their conclusion on:
"The syndrome is associated with ... lack of compliance with recommended treatments"
http://bestpractice.bmj.com/best-pr...ign=Feed:+bestpractice/recent+&forumid=331851

ETA: Oh, and I hadn't noticed this on the same page:
"Graduated, low-impact exercise and cognitive behavioural therapy (CBT) is recommended for all patients."
This is another dangerous statement.
The FINE Trial proved that severly affected patients don't respond to psychiatric interventions, so this is not based on the latest evidence.
They should also qualify their statements by saying that patients should be able to refuse any specific intervention, without prejudicing their overall treatment plan, as per the NICE Guidelines.

The NICE guidelines state that a patient should be able to refuse GET and CBT without prejudicing their treatment:
"Healthcare professionals should be aware that like all people receiving
care in the NHS people with CFS/ME have the right to refuse or withdraw
from any component of their care plan without this affecting other aspects
of their care, or future choices about care."
http://guidance.nice.org.uk/nicemedia/live/11824/36193/36193.pdf

One lie that caught my eye in the BMJ entry on "CFS": "CFS" can be unpleasant, but "is not dangerous" to one's health. Tell that to all those who have died from ME.

consumerreports.org uses the BMJ as it's health info site. A bit ironic for an org that is supposed to be an unbiased advocate for consumers.

 

[taniaaust1]

For those who would rather not give additional hits to Miss Abby Smith's blog; she has posted the text of an email she says she received from someone apparently called "Ron".

The content's not pleasant.

She's run the (static) IP through WHOIS and posted an image file of the WHOIS return.

The IP she says has been registered in the name of the

"WITTEMORE PETERSON INSTITUTE" [sic]

location registered as "Nevada".

This has apparently been registered through SBC Internet Services.

As any fule kno, any fule can register an email address/domain in the misspelled name of another organization.


The misspelling of "Whittemore" has been pointed out to Miss Smith, but she'll no doubt insist that this email must have originated from the WPI, themselves, and so will her fans.

Sad, really. A scientist, too.

Note that the domain for the WPI is

http://www.wpinstitute.org/

Registrant Name:HARVEY WHITTEMORE
Registrant Organization:HARVEY WHITTEMORE

Name Server:NS27.WORLDNIC.COM
Name Server:NS28.WORLDNIC.COM

I wish the WPI could take up legal action on that someone trying to impersonate them.

I think things like this will keep happening too the trouble makers know they cant do things like this and be getting away with it.

 

[WillowJ]

Tactically, we should not accept the premise in attack pieces like this, the one in the BMJ, and Horton's disgraceful interview about the opposition to the PACE trial. This is a persistent theme in the press strategy: to constantly draw attention to what even the BMJ describe as a very small minority of patients and to misrepresent the valid concerns of an entire community of millions of sick patients as if they were characterised by wild and unreasoned anger. Would that a similar amount of ink were spilt on considering the very real and substantial suffering and grievances of those millions of sick people!

The reality is that ME/CFS patients in general show extraordinary grace, patience, and restraint in the face of such extreme and persistent provocation. The real story is the twisted way in which we are so often misrepresented, and the questions to be asked are: who has such an interest in representing us like that, what do they hope to achieve by it, and why do they keep doing it?

Well said; thank you!